Special Needs (Genetic), Singapore

Special Needs Challenges - read

Special Needs Medical - read
Special needs person unVaccinated - read


Great Eastern supports Special Needs through SNTC GOAL Sponsorship Scheme, Nov 2021

Gift of a Lifetime (GOAL) to help low-income families with special needs children secure long-term financial needs.  The scheme will help lower-income caregivers with the initial capital of S$5,000 needed to set up a trust account for their children with special needs.”

What's SNTC?

A SNTC Trust is a necessary infrastructure to ensure your loved one receives the gifts under your will, insurance and CPF savings nomination - read

Principal value of the trust funds is guaranteed by the Government.

Fees are 90–100% subsidised by the Ministry of Social and Family Development (“MSF”).

If you are a caregiver of a person with special needs, you may worry about planning ahead for the future care and well-being of your dependant. SNTC has free online talk which serves to equip families with the knowledge of planning in advance for their dependants with special needs.  Eg: Wills, Deputyship & LPA (with an emphasis on Wills).  

- Why is it important to plan ahead for your loved ones with special needs?

- How are Wills, Deputyship, and Lasting Power of Attorney (LPA) relevant to caregivers of loved ones with special needs?

Under the Mental Capacity Act, a person can appoint a trusted individual to make decisions for him in the event he loses his mental capacity. The person can also instruct a caregiver to set up a trust with SNTC so the caregiver does not need to be accountable for financial matters.

SNTC Case Manager will guide applicant(s) through the making of CPF nominations, ensure insurance policies are listed, prepare a will and update care plans.  Explore choices - rely on relatives and friends to act as deputies, adult disability home, etc.

特需储蓄计划 (SNSS) 是由新加坡社会及家庭发展部 (MSF) 与公积金局（CPF Board）合作推出的计划

The SNSS enables parents to set aside CPF savings for the long-term care of children with special needs. Under this nomination type, parents can nominate their children with special needs to receive monthly disbursements from the parents’ CPF savings after their demise. Watch the video to learn more!

If my memory didn't fail me, money sank into SNTC has no interest.   Till date, I've not setup any SNTC Trust but I just did Assisted Deputyship Application Programme (ADAP) (via Zoom meeting) thru Rainbow school, almost one year after my child was graduated.

Assisted Deputyship Application Programme

ADAP aims to make it simpler and more affordable for parents of children with no mental capacity to manage their own matters in adulthood to apply to Court to be appointed as deputies for their child. This allows parents to continue making legal decisions for their child after he or she turns 21 years old.

SG Enable supports parents by providing guidance to the parents in their deputyship application and the mental capacity assessment reports prepared by the psychologists at the Special Education Schools (SPED Schools), some Day Activity Centres (DACs) and Sheltered Workshops (SWs) are accepted by the Courts in place of a medical report.

Who is eligible for ADAP?

To be eligible for ADAP, one has to fulfil the criteria below: 

- Child is between 18 to 21 years old and in the graduating cohort in a SPED school or DACs and SWs offering ADAP;

- Must be an uncontested case (i.e. straightforward application where family members and any other caregivers agree with the application). 

Lasting Power Of Attorney (LPA)

Enables a person to make a personal, considered choice of a trusted proxy decision maker, who is reliable and competent to act in his/her best interests should he/she lose mental capacity one day.

Alleviates the stress and difficulties faced by loved ones who need to apply for a Deputyship order, if the person loses mental capacity without an LPA in place.

Strengthen transition support for kids with special needs,  Straits Times, 10 Jul 2016
We agree with Dr Lucy Pou Kwee Hoon on the need for a road map in special education ("Need for road map, community input in special education"; June 26).

Parents of children with special needs may not always have the knowledge or time to research the options and assistance available and how to go about getting them. A road map that allows parents of children with special needs to navigate the special needs education system, both pre- and post-school, will assure them that their children can develop their potential and live a fulfilling life, like any other typical developing child.

With greater clarity of options and education pathways, parents will be able to plan for their children's lives and manage their school experience better.  We are encouraged that through the Enabling Masterplan, there have been significant improvements in the support available to children with special needs. While this is so, access to special needs services could be further improved.

There are students with special needs who are not coping well in mainstream schools, but are considered faster in development and, therefore, unsuitable for special education schools.

Perhaps more options could be explored for these children, for instance, smaller class sizes or a differentiated learning programme within a mainstream school. This should go hand in hand with greater support and training to equip teachers and allied educators with appropriate strategies to handle children with special needs, as well as encouraging greater understanding of students with special needs among peers.

In addition, transition support for children with special needs at different life stages could be strengthened. More resources and assistance could be put in place to advise parents on the choices available at the child's next stage of life, and to help children with special needs better prepare for changes when they transit from early intervention programmes to mainstream schools, from school to work and from adolescence to adulthood.

This will reduce dropout from programmes, encourage continuity in the child's development and facilitate eventual participation in the community.

When there is a clear route for children with special needs and strong transition support at different stages of the child's life, parents, together with their children, will be able to make informed decisions and plan for the long term for their children's life goals and targets.

Abhimanyau Pal
Executive Director SPD


Need for road map, community input in special education, Straits Times, 26 Jun 2016
Two recent articles ("The heartbreak of caring for an autistic child", June 18; and "She taps into her grief to help others heal", last Sunday) highlight the helplessness and hopelessness that parents of children with special needs are extremely vulnerable to.

These often stem from concerns relating to seeking appropriate educational placement for their children, as well as the lack of ongoing and appropriate support for their children's developmental journey, from early childhood into adulthood.

It does not help that often, choices for educational placement are extremely limited and limiting, in terms of appropriately developing the unique abilities some of these children have.

Navigating the educational pathway can be confusing and stressful for parents, especially when different organisations offer similar programmes.  This is exacerbated when parents do not get family support or understanding, or when educational placements do not work out.

In the context of this, two considerations are essential.  First, a road map is needed for educating children with special needs, from early intervention through to the post-18 years.  It should map out pathways of functional goals for children with special needs that lead eventually to their participation in community life.

Having such a road map demonstrates to parents of children with special needs that as a society, we are committed to the same standards of accountability, consistency and continuity of learning that are accorded to children in mainstream education.

Second, the role that "community" has in special education has not been sufficiently explored and effectively utilised.  A community paradigm of special education goes beyond classes of students making regular trips to the local supermarket to learn money sense or how to ride on public transport.

Rather, it entails members of the community - the waiter, the baker or the sales assistant - contributing to the design of the special curriculum and playing a role in co-training skills at appropriate stages of curriculum delivery.

Members of the community can, thus, shed the role of passive onlooker, to actively work alongside those with the lifelong responsibility of caring and supporting individuals with special needs.

Lucy Pou Kwee Hoon (Dr)


=================
Those of us who have special needs children know just how hard it is to find the resources and assistance that we need in order to be able to do our best for our kids. No one knows our reality until they have walked in our shoes, knowing that we understand your frustration. We are just parents, not professional so any comments posted are based on experience.  Singapore doesn't have a one-stop centre that can help and answer you well.  

Internet is a powerful tool.  If you want info but have been bouncing from one centre to another, maybe you can search the internet.  Sometimes, an experienced social worker can help.


"Special Needs" is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.

"Special needs" are commonly defined by what a child can't do -- by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make "special needs" seem like a tragic designation. Some parents will always mourn their child's lost potential, and many conditions become more troubling with time.

Other families may find that their child's challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.

Different Concerns
Pick any two families of children with special needs, and they may seem to have little in common. A family dealing with developmental delays will have different concerns than one dealing with chronic illness, which will have different concerns than one dealing with mental illness or learning problems or behavioral challenges. T

Behavior Issues
Children with behavior issues don't respond to traditional discipline. With diagnoses like ADHD, Fetal Alcohol Spectrum Disorder, Dysfunction of Sensory Integration, and Tourette Syndrome, they require specialized strategies that are tailored to their specific abilities and disabilities.  If those strategies are not developed and used, kids with behavior issues throw their families into chaos and are seriously at risk for school problems. Their parents need to be flexible and creative.

Developmental Issues
Developmental disabilities are some of the most devestating for a family to deal with, changing visions of the future and providing immediate difficulties in caring for and educating a child. Diagnoses like autism, Down syndrome and intellectual disabilities often cause children to be removed from the mainstream, and parents must be fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.

Learning Issues
Children with learning disabilities like dyslexia and Central Auditory Processing Disorder struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged kids need to be persistent both in working with their reluctant learners and with the schools that must provide the help these children need.

Mental Health Issues
A child's problems with anxiety or depression can sneak up on parents; problems with attachment may smack them right in the face. Living with a child with mental health issues can put family members on a roller coaster of mood swings and crises and defiance. Parents have to find the right professionals to help, and make hard decisions about therapy, medications, and hospitalization. The consequences of missed clues and wrong guesses can be significant.

Common Concerns
Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. 

What's Life Like for a Special Needs Kid?
Life can be extra-challenging for a kid with special needs. It might be harder to do normal stuff — like learning to read or, if a person has physical handicaps, just getting around school or the mall. The goal is to help kids be as independent as possible.

Being friendly to kids with special needs is one of the best ways to be helpful. As you get to know them, they may help you understand what it's like to be in their shoes. And you'll be helping fill a very special need, one that everybody has — the need for good friends.

DNA Diagnostic & Research Laboratory - KK Hospital
Some tests available: 
Alpha-thalassaemia - DNA analysis for 99% common local α-thalassaemia mutations
α1 and α2-globin gene sequencing

Achondroplasia - DNA analysis of specific exon 8 mutation on FGFR3 gene

Angelman syndrome (AS) - DNA methylation analysis of SNRPN gene
Identifies ~70% of AS

Beta-thalassaemia - DNA analysis for 99% common local ß-thalassaemia mutations
ß-globin gene sequencing

Craniosynostosis syndrome - DNA analysis of hotspots in FGFR1, 2, 3 & TWIST genes

Fragile X syndrome (FX) - DNA analysis of CGG trinucleotide repeats in FMR1 gene which accounts for >99% of FX

Huntington Disease (HD) - DNA analysis of CAG trinucleotide repeats in exon 1 of Huntingtin (HTT) gene (Exclude predictive / presymptomatic testing)*

Kennedy Disease (KD or SBMA) - DNA analysis of CAG trinucleotide repeats in exon 1 of androgen receptor (AR) gene (Exclude predictive / presymptomatic testing)*

Myotonic dystrophy (DM Type 1) - DNA analysis of CTG trinucleotide repeats in DMPK gene (Exclude predictive / presymptomatic testing)*

Prader-Willi syndrome (PWS) - DNA methylation analysis
Identifies > 99% PWS

QF-PCR- Rapid detection of chromosome aneuploidies of chromosomes 13, 18, 21, X & Y with 99.9% sensitivity

Spinocerebellar ataxia (SCA) - DNA analysis of trinucleotide repeats expansion for SCA types 1, 2, 3, 6, 7 and DRPLA (Exclude predictive / presymptomatic testing)*

Spinal muscular atrophy (SMA) - Detection of homozygous deletions of SMN1 gene which account for 95-98% of SMA

Spinal muscular atrophy (SMA) carrier test - Carrier testing by estimation of SMN1 gene copy number

Y chromosome deletion - DNA analysis of microdeletions in AZFa, AZFb and AZFc, male-specific region of the Y chromosome which accounts for 95% of clinically relevant deletions

Turnaround time for QF-PCR report: 2 to 3 working days 

Turnaround time for all other test reports: 4 to 6 weeks


What if I have a Child with Special Needs?
Katherine, a home-maker, did not notice anything wrong with her firstborn Michael until he was about three years old. She recalls, “He did not hold eye contact with people who were talking to him, and showed signs of regression in his motor skills. For example, he started to tip-toe instead of walking normally and also lost his ball skills.” He also had constant tantrums, up to five times a day.

Katherine brought Michael to a child psychologist and after undergoing a full range of tests, Michael was found to have autism spectrum disorder (ASD), on the higher functioning end of the spectrum, as well as speech delay. High-functioning autism (HFA) is a term applied to people with autism who have a IQ of above 70. With this they are deemed to be cognitively “higher functioning”.

After learning about Michael’s condition, Katherine researched treatment and therapies available, as well as therapy centres that she could turn to. She then enrolled him in a private special-education school that bases its curriculum on Applied Behavioural Analysis (ABA) techniques. Michael attends this school on weekday mornings. He also receives speech therapy weekly.


How do I know my baby has a special need?
Special needs may range from mild (e.g., children with mild learning disabilities or food allergies) to the more severe (e.g., children requiring regular medical attention).

Some tell-tale signs include:
– extreme tantrums, non-compliant behaviour
– delay in development of speech, gross or fine motor skills
– regression in physical development
– dietary sensitivities and allergies

– sensory sensitivities (e.g. to touch, heat, and sound)




Readers may post in this blog as ID: Anonymous.  I have the rights to delete offensive, irrelevant or unkind comments.

Email me